This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Saturday, July 31, 2010

I have always been very, very compliant with my tube feeds. If I take a night off from tube-feeding I feel so much worse the next day, as I miss out on so many calories, and therefore I am usually very compliant when it comes to tube-feeding.

Well, this is going to be my fourth night on the elemental formula (Survimed OPD, and my compliance is fading. I know I feel better on the new formula, and I know I have no choice at the moment, but I am having such a hard time with the smell and burped up taste that it almost makes me cry measuring out my feeds at night. I have to be on the formula for four weeks before we recheck my lab values and determine, if I have to continue on the formula.

The thing is, I know I cannot be not compliant, I have to stick with it for those weeks and possibly for longer.

M and I saw our family therapist yesterday for our monthly session and this is the visualization I came up together with her: whenever I am feeling down about the new formula I visualize myself as a healthy and strong woman walking with M on a beautiful mountain pasture holding a child on each hand....

I had my first iron infusion yesterday. I was a bit apprehensive at first, as my family doctor had originally planned on giving me an intravenous injection instead of iron infusions, but she had changed her mind by the time I went to see her yesterday. I received 10 ml (200 mg iron) of venofer slowly over 2.5 hours, and I did really well with it! I only had a metallic taste during the infusion, but that stopped once the infusion was over.
Today I feel a bit off, but I guess my body has lots of work to do storing all that iron.

Thursday, July 29, 2010

I received my semi-elemental tube feeds (a mixture of oligopeptides and free aminoacids) yesterday. The color is very strange and yucky looking, but the smell is even worse!

I had hard time keeping myself from gagging when I measured out my tubefeeds yesterday evening. The only disadvantage is that it is 1.0 formula (1 cal/1ml), and I now have to tubefeed so much more and longer!!!

Nevertheless, it worked really well last night! Burping it up was quite disgusting too, but I tolerated it much better than my old formula, as my stomach doesn't have to work lots moving it forward at all. It is a very thin liquid and liquids work a lot better for me anyways. I am positive that I will be able to increase my calory intake again, and I am actually planning to go to a higher calory intake again for a few weeks to gain back the weight I lost over the past few weeks.

Hopefully, it works for my hypoalbuminemia as well, and hopefully I will be able to get used to the smell.

Up until now I was insured with my Mum and Dad (two different insurance companies). I always used Mum's insurance company for my enteral nutrition - she has the best insurance company over here in Austria :-).

Due to no longer being a university student I could no longer be insured with my parents. I am not going to start working in the hospital until November and therefore had to find a way of being insured in the meantime. It was decided that I was going to get insured through M's insurance. We do have to pay a lot more for my insurance now, but I can't not be insured... Anyway, M is insured through an insurance company that usually is very picky about paying for enteral food and especially for enteral pump giving sets. This has been worrying me for a long time, as we are not really able to pay for my food out of pocket.

Last Friday I called the insurance about how to arrange my enteral foods delivery, and they put me through to one of their docs. She ended up being really nice, asking me why I needed tube feeding and when I told her why, she immediately agreed that they would pay for my food and my pump feeding sets! She then put me through a guy working in administration because she said that getting my food in Vienna will be a problem. The thing is, M works for a non-profit organization that is located in Salzburg (four hours away from Vienna), and even though he lives here in Vienna his insurance company is the Salzburg branch of the main Austrian insurance company. This insurance company has a deal with all pharmacies in Salzburg that tube feeding formulas and giving sets can be ordered through any pharmacy in Salzburg and picked up there. Well, I can't drive to Salzburg just for picking up my formula.

This is how it has been arranged now:

My dietician faxes my prescription to the insurance company, they approve it and fax it to my old home care company (Fresenius Kabi - I have their food, pump and giving sets) in Graz. My dietician has to send the original (non-faxed prescription) to the home care company as well. My home care company then arranges delivery to me, and sends the faxed approval, the original prescription, and their bill to a pharmacy in Salzburg. This pharmacy then bills my insurance company!
Crazy.....
But it worked! They even approved my semi-elemental tube feeds without any problems.

Tuesday, July 27, 2010

Yesterday, I finally got see my GI doc. I haven't seen him in a year, as he has his practice two hours away from Vienna, and usually we communicate through e-mail. With all my GP problems in the past few weeks/months and not being able to tolerate domperidone any longer, I knew it was high time to go and see him.

Here is what we concluded on:

He is going to start me on either cisapride or prucalopride for my GP. He says that cisapride is still a save and very effective medication for GP, and adverse side effects can be avoided by having an ecg and checking electrolytes before starting the medication. Cisapride is available through compassionate use in Austria. Another option is prucalopride, which is available in Germany and I might be able to get that through compassionate use as well. The only problem is that both meds promote colon transit time as well, and I tend to have diarrhea anyway.

I am to continue with oral vitamin d and calcium supplementation.

I am to have IV iron twice to refill my iron-stores, as I am not able to absorb iron orally anymore. Three months of high dose oral iron supplements did not change my ferritin level by even one point.

As to the reason for my hypoalbumenia: I am already on a high protein tube feed and take in protein through dairy products orally as well. I am therefore either not absorbing the protein very well or losing protein enterally. As a next step he put me on a semi-elemental tube feed and we are to re-check my albmine levels in a month. If they are still low, he wants me to have a capsule endoscopy.

I am so happy that I went to see him! My family physician said to me that there are no more med options for me - that's obviously not true. I am also very relieved that he is trying to get my ferritin and albumin levels sorted out.

All in all a very successful appointment and definitely worth spending four hours in the car.

Wednesday, July 21, 2010

After having some odd blood levels in April, my physician and I held off on re-checking my blood values until I after my diploma exam. Early July I finally got everything re-tested. The funny thing was that some of those off levels were passed off as being due to an infection in April, even though I insisted that I did not feel sick in any way. This time around my blood levels were still as off. First my physician tried to brush me off again with saying that I must be sick. But when I kept telling her that I feel really well besides my usual slow stomach symptoms that I have been in fact been able to go running every day, she did listen to me a bit more.

My ferritin level did not budge a single digit - it stayed at the exact same low level despite high dosage oral iron. Obviously I cannot absorb oral iron at all. My albumin level was still low, actually even lower than last time, even though I am still on a high protein diet.
But now my vitamin d is low as well, even though I take in more than the required daily amount with my tube feeding formula, probably an absorption thing again.

My stomach emptying has been really off too. Part of it might be the incredible warm weather we have been experiencing, but still this latest flare up has been going on off for weeks now. I have not been able to meet my usual oral intake, but have also not been able to make up for the lack of calories during the night because I had to lower my tube feeding rate during the night due to my stomach emptying problems. M finally convinced me to stay away from oral foods for a couple days and tube feed during the day as well. So that's what I did today. At least my nausea has been a lot better today! I just hate to tubefeed during the day.

It has been decided that it is high time to visit my GI doc (he has practice two hours away). I have an appointment for the coming Monday, and I can't wait to see him. I hope, he has some good ideas on what's going on with my digestive tract.

Monday, July 19, 2010

M and I had a great time in Italy, until, as always, I started breaking out in hives from sun allergy. Darn. I still hope every year that it won't happen, but it does anyway. On top of everything else the heat was almost unbearable. A heat wave had hit Italy, and we right in the middle :-). Even swimming in the ocean did not cool us off by the middle of the week.

Unfortunately my stomach does not like the heat at all. I have not felt as sick in a long time. Lots of nausea, a very hard time eating foods orally and with me being at the beach so much, I have to admit that I wasn't as compliant as I usually am with my tube feedings. I was not able to make up for the lack of oral foods as I would usually do, and as a consequence I feel quite weak now. It's quite interesting how much I am used to my high energy intake, and how weak I feel after a week of not tubefeeding/eating enough. I guess I am the only woman out there that actually loses weight during a vacation. Am trying my best to ramp up the calories again, can't afford to lose anymore weight otherwise my dress won't fit :-)

Saturday, July 3, 2010

I have been meaning to blog about some exam stuff - or actually post-exam stuff.

Diploma exams in our Psychology Master Program always are oral exams with three examiners. I did not have a single oral exam throughout my entire university time - always written exams. If I didn't pass this exam, I would not be able to re-take it until October. Understandably I was very nervous and anxious.

I really wanted M to come with me, wait in front of the exam room and be there for me to hug me right after and celebrate with me. Unfortunately M had a meeting that he simply could not re-schedule. I was quite sad because I knew that all the other students would have someone waiting for them outside, and I didn't want to be all by myself after the exam - if I passed, I wanted to have someone to share the joy with.

I didn't want to ask my friend Donata to come and be with me - she lives an hour drive away and her and the twins were just getting over a cold. So I asked Cathi, if she could come with me. Cathi and I met at the Institute for environmental hygiene here in Vienna. That's where I worked as a teaching assistant, and she was - actually still is - employed for a big EU project my (our) prof leads. He was her thesis advisor as well and she just took her diploma exam a month ago. She was kind enough to take off some time from work and come down to the campus to stay with me.

I was so happy to have her there. She waited with me upstairs until I was asked into the exam room and it was very comforting for me to know that she was waiting for me outside afterwards.

The exam itself was quite the experience. I don't want to blog about it - just know - that my prof was true to himself even during my exam - I did great anyway, I definitely did not let him get me down, and I passed with honours nevertheless :-).

Anyway, after the actual exam I was asked to go outside, as the examiners have 10 minutes to discuss the grades in private.
I walked outside, flew into Cathi's arms, told her all about the very typical behavior of our prof, when I looked to my left and saw Donata pushing the red twin stroller through the crowd of students. I almost couldn't believe my eyes. I was so touched that she had come all the way with the twins in tow just to be there for me!

I was then asked back inside, got my grades, and out I was - a Magistra rer nat (that's my title here in Austria :-). M was the first person I called, next my Mum - who of course broke into tears, than my Dad, and of course Peggy :-).

Cathi, Donata, the twins, and I then went to one of Vienna's most famous coffee houses to celebrate my exam success. What a feeling it was after the exam - I could hardly believe that this was really it, that I really had my Magistra, that I was done with my university education, that I had been able to overcome so many obstacles and still succeed.
M joined us too - and then my Dad called M's cell phone, M passed on the phone to me and Dad said: "Julia, we know how hard you worked, and we think what you really need now is a vacation. That's why you are going to Italy with M on the 10th of July." At that point M silently handed me the booking confirmation for our vacation. I was so excited and full of joy! M and I had cancelled our traditional summer vacation in Italy for money reasons. Something that had made me so sad, but of course I understood M's reasoning behind it. Hearing that my Dad was making it possible for us to go nevertheless, made me feel so happy! That's what Dad's are for :-) - to make things possible for their little girls, and I guess in that respect we will always be little girls for our Dads.

So, yes, tube girl is setting off for another vacation to Italy a week from today, with my backpack, feeding pump and formula in tow, and my trusted hand blender of course :-).

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.